Mild EDS

[AberdeenAngusina]

A child in my family was diagnosed with EDS 12 years ago. The whole family was checked, and I was diagnosed then, too, but I am clearly at the mild end of the spectrum. However, I'm now in my late forties and in the last six years have had various joint problems, all of which I'm susceptible to because of EDS. I have had successful surgery on one joint, and currently have tendonitis in three places, which is impacting on my life in many, albeit fairly minor, ways.

Everything I read on the net is about severe EDS. Does anyone else have multiple minor health niggles from mild EDS, and advice about managing the condition?

Hi there

I just read your post about EDS. My son (10yo) has just been diagnosed with this although no genetic testing has been done. Im shocked/ terrified, you name it after reading all the info on line about it. He was otherwise fit and healthy prior to going into a dermatologists office and getting the diagnosis. Hes sports mad! Hes off at soccer today and Im just terrified hes going to start getting injured now and Im unsure whether he should even be playing!

The doctor didnt give me any info other then saying he had a mild case (very bendy fingers, flat feet, soft skin but not stretchy). He didnt make it sound like anything to worry about so I came out of the office not panicking or anything - just a bit of hypermobility was all I was thinking.

My question is - does it always progress into something nasty? Can he not just go through life with bendy fingers and flat feet? Im now imagining wheel chairs and disability stuff?? Im a little bit bendy in the fingers - nothing like him though, and I can touch the floor with flat palms and I havent had any troubles at all. Fit as a fiddle. WOuldnt have thought there was anything wrong with me at all but now reading on line I see masses of people who were like this as kids and then basically end up a shell of their former selves.

If you're at the mild end of the spectrum with it, did you manage to have a relatively injury free childhood?

Any advice would be great. Im in New Zealand so Im guessing no doctors here will know anything much at all since its a relatively rare thing.

Gutted for my boy :( Theres no one in our family with any bendy issues at all!

Would love to hear from you if you have time

Whoops - this was supposed to be a private message but in my panic Ive made a public one :) Anyone out there have any advice on this ?? Thanks

Report it to MNHQ using the report button next to the thread - fill in the form and just say what you said in your second post. They will then hide it for you.

Oh and copy it first so you can just paste it into a pm rather than retyping

Hi there,

I have relatively mild EDS! I was diagnosed at 12 after four knee dislocations in rapid succession (in combination with other markers, e.g high arch palate, x-rays indicating no 'grooves' for kneecaps to sit in etc thus increasing risk of dislocation.)

Anyway I have led a relatively normal life so far - I do experience joint pain particularly in the evenings although this is somewhat confined to my knees and not widespread - plus this has completely disappeared by the following morning. I do sometimes get weird 'injuries' that seem to come out of nowhere at all (perhaps a result of hyperextension) but again they get better fairly rapidly. I do find it difficult to kneel on soft surfaces and to be honest I probably would find it difficult/impossible to do some sports that involve twisting and bending particular joints but luckily never something I've been that bothered about. I'm not going to pretend that it hasn't impacted on some areas of my life but I'm still able to be active, I work full time as a nurse and I certainly don't have chronic pain to contend with. I also have sort of learnt how to do basic things in a way that poses less risk to myself - e.g. getting into a car by sitting down and then swivelling rather than putting all the pressure onto one knee. I know that sounds trivial but little things like this help and minimise the risk of injury.

I suppose I just wanted to reassure you really that diagnosis certainly doesn't mean the horror that you read on the internet. My joints have not go any worse over the last 5 years and although I have read that I am at risk of osteoarthritis I try to minimise the risk of this as best I can (try and keep my weight down, do some gentle physio exercises etc to strengthen the muscle groups around the joints which will help stabilise them). My hormonal changes also impact and I know that I'm more likely to have joint pain when progesterone levels are high so am a little more careful with myself then.

This has got a bit long - please feel free to PM me if you want to talk about it more (either of you!) You can read horrible stories on the internet but every individual is different and will learn what their limits are :)

P.s I'm 29

hi,
I have eds. the biggest piece of advice I would give you is to be aware that you are at increased risk of birth injuries including severe tears and pelvic organ prolapse if you give birth vaginally. NHS tends to downplay the risk.

other stuff to say, but DD is trying to climb on my head, so will be back later!